Palliative Care: Keeping People with Parkinson's Comfortable
Palliative care is a specialized medical approach that improves the quality of life of patients and their families facing life-threatening illness. It aims to prevent and relieve suffering by identifying and assessing pain and other problems, including psychosocial and spiritual concerns, as well as physical ailments.
Palliative care grew out of the hospice movement in Great Britain in the 1960s, which continues today to provide care to patients who are terminally ill, generally within the last 6 months of life. But palliative care can be offered to people with serious but non-life-threatening illness, too, including those with Parkinson’s disease (PD).
How does palliative care work?
The term comes from the Latin root palliare, to cloak or mask pain. As early as the time of diagnosis, a medical team can keep people comfortable, manage pain, and provide support and counseling. Palliative care is generally offered in a medical facility and often administered to complement traditional medical treatment.
Palliative care decisions for those with Parkinson’s disease are not that different from those for people with other illnesses: reducing pain and receiving care in a supportive setting. The care team can assist in coordinating the best resources to address needs at each phase of the disease.
For some people living with Parkinson’s disease, the non-motor symptoms can be even more severe than movement issues. More than half of people who have PD experience cognitive dysfunction, which means they could even lose their ability to make decisions for themselves or be cared for at home. This is where a palliative care plan can really make a difference for people living with Parkinson’s and for their families as well.
Discussing end-of-life care
Cultural, religious, and age-related differences affect how people think about death. Not everyone discusses end-of-life issues with his spouse or partner, siblings, children, physician, or spiritual advisor.
Death has become harder to talk about. Fewer people experience the process at the side of a loved one, family member, or close friend. Just 10 percent of Europeans over age 80 live with their families; half live alone. By 2020, 40% of Americans are expected to die alone in nursing homes.
End-of-life care is a surging field, especially among the baby boomer population. For anyone with a chronic disease, including those with PD, discussing treatment goals now and understanding wishes for desired degree of medical intervention later can all be part of a palliative care plan.
Sharing treatment goals through advance directives
Advance directives are legal documents, such as living wills, that allow people to express their wishes for future medical care. A healthcare proxy allows an individual to name a representative who will make medical decisions for him if he is no longer able to do so on his own. These documents are often created when someone is healthy or first diagnosed. Keeping them handy and updated is important. Family, caregivers, and medical providers should have current copies.
Sharing treatment goals through advance directives is an important step for people with PD. For those who may experience cognitive dysfunction, establishing advanced directives before this stage eliminates confusion and can help assure that their wishes are honored. Advance Directive forms vary by state and most are available online. Check with a healthcare provider or attorney to be sure you are accessing the right ones.
Start the conversation with others
Today, people increasingly die from chronic disease and old age. Dying has become a medical experience. Death used to be an occasion where friends and family gathered. Today, a changing family structure and geographic dispersion likely contribute to many elderly dying alone or isolated.
When asked, Americans prefer honesty from their healthcare providers, regardless of the prognosis. Yet, people have different goals for living with a chronic disease and facing the end of life. Selected concerns include:
- Family not financially burdened by their care (54 percent)
- Wishes for medical care are followed (49 percent)
- Having loved ones around them (48 percent)
- Being at peace spiritually (46 percent)
- Families not burdened by tough care decisions (44 percent)
- Being comfortable and without pain (42 percent).
- Living as long as possible (23 percent)
Providing care at the end of life, as at birth, is part of a journey. It can be made more comfortable. Starting a conversation about palliative care with a healthcare provider can provide support and minimize stress for the person who is ill and his loved ones.
Do you find music to be an important factor in your life with PD?